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Posted
Anyone with any suggestions. Every so often I get SEVERE diarrhea(brown water!!) which of course leaks out of Koch pouch. Has happened since 1979 when op was first done. Original dr said I would just have to live with it. Cleared up after 2 frustrating years then. Everything worked okay until several years ago. Diarrhea happens only sometimes, other times continent and thicker. Previous years got different answers ie cut out the milk, female hormones. In 2003 after severe flu virus diarrhea started again and no dr would agree anything was wrong (one said I was just depressed). Boyfriend complained of my bad body odour and said to see his dr who gave me course of Flagyl and odour, diarrhea, and my feeling of just wanting to lay on the bed were fixed within 2 days. Several bouts body odour treated sucessfully with Flagyl in 2004, with some bouts of diarrhea treated with Imodium without body odour. Naturopath said to stay off gluten. Some bouts diarrhea (caused loss of B12 and other electrolytes) and no body odour during 2005 till December 2006. 2007 a nightmare with the dr trying every thing including Prednisone for the diarrhea (but no body odour). All tests and biopsy showed nothing wrong. Fired from my job because I spent too much time in bathroom end 2007. Have had some trouble getting catheter in for a couple of years so there is a problem with the valve but it seems unrelated to the diarrhea problem. However March this year was good with minimal diarrhea. April really bad diarrhea and then complaints of body odour by boyfriend (this has never been relating to leaking faeces - odour stays even when no leakage, clean clothing, fresh shower etc.) Tried a course of Flagyl which I knew hadn't worked because just wanted to stay in bed. Dr tried course of Flagyl+Keflex which still hasn't worked. Have been referred to a gastro (so pro Koch pouch it's a dream). Tests ordered are the same as Dr ordered last year including a biopsy coming up in July. Doing anything is exhausting and I just don't want to get out of bed (not like me at all). March (normal health) got down to one load of washing for whole of week and clothing was never soiled after use. Since April if I don't do a full load of washing every 2nd day I won't have anything to wear - leaking is so bad I have to do several changes of clothes. Anyone have any suggestions about what could be wrong? Complaints of body odour persist but I can control the diarrhea with Imodium for half a day if I have to go somewhere. Couple of days here and there I have no diarrhea.
 
Posts: 12 | Location: Sydney, Australia | Registered: February 27, 2008Edit or Delete MessageReport This Post
Posted Hide Post
You may want to get your valve checked. Even if your output is watery, it should not leak.
 
Posts: 1011 | Location: Staunton, Va. | Registered: March 04, 2004Edit or Delete MessageReport This Post
Picture of Pixie
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I don't know about body odour but I do know that if your digestive system isn't working properly that some people can get really bad breath since the whole system is connected - esophagus, stomach, intestine, etc.
I can't remember whether I read about it somewhere on this forum or somewhere else. I think it had something to do with malabsorption of certain nutrients and other things that your body needs.
Not sure if that helps at all but maybe you could Google it to get some more information, or ask your doctor if they know about it.


I'll walk this winding road into the great unknown.
 
Posts: 468 | Location: BC, Canada | Registered: April 12, 2007Edit or Delete MessageReport This Post
Picture of dgloria5
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If you are eating anything like candy or cookies and chewing sugar free gum that has sorbital in it to give a sweeter taste, that will for sure give you diarrhea (brown water) It will even say so on some pacages.


gloria...Life is like a Dance, you learn as you go.
 
Posts: 599 | Location: arroyo grande, ca | Registered: February 21, 2001Edit or Delete MessageReport This Post
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Have you thought about going to an endocrinologist for the body odor?


Kock 1979; end ileo 2003; Kock 2006
 
Posts: 521 | Location: Florida | Registered: October 31, 2004Edit or Delete MessageReport This Post
J
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Have you tried Devrom(bismuth) - it's not only for pouch deodorant - helps with other. And, clorophyll, too.


Ileo 1979; Kock Pouch 1979; Cholecystectomy 1985
 
Posts: 290 | Location: Orange County, CA | Registered: May 13, 2008Edit or Delete MessageReport This Post
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Thanks for suggestions. I have received so many different opinions about why the diarrhea occurs. It seems unrelated to the problem I have with Koch valve - problem in Aust actually getting someone who can do the operation to repair the valve but I am working on it. Figure though if the body odour is there then there is something underlying wrong. Will ask dr about gall bladder because that is the way I am thinking - something else is causing either the diarrhea and body odour, which both seem to come and go separately, the body odour only in the last year or so. Janice were you treated for the stomach erosion? Last year the internal investigation reported inflammation believed to be from inserting the cath. Treated with suppositories then. Previous courses of Flagyl have always dealt with diarrhea and body odour at same time but not this time. Just finished another antibiotic which didn't work. Will get on to Google and see what I can come up with.
 
Posts: 12 | Location: Sydney, Australia | Registered: February 27, 2008Edit or Delete MessageReport This Post
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There are a couple of really unusual metabolic diseases that can cause strange body odors. One of them makes you smell like maple syrup, another one like fish. Ketosis (which can be caused by a bunch of things) can also create a strong odor, almost like nail polish remover. Some of these are genetic and you either have them from birth or you don't have them, but I don't think it's true of all. So I second the suggestion about the endocrinologist.

On the other hand, if no one but your bf is smelling this, it may be that he has unusual sensitivity to smells. Possible?
 
Posts: 100 | Location: Flyover Country | Registered: March 06, 2008Edit or Delete MessageReport This Post
Picture of skn69
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Ok, here I go...where is the odour coming from???? the stoma or the skin? or is it the contents of your pouch that have a strong odour?
First, when was the last time (if ever?) you were tested for food alergies???? Stranger side-effects happen..it is not only hives and itching..if you are allegic it could cause it, go the traditional route with an allergologist but you may also wish to try a chiropractor (?).
They have a really niffty machine in some of their offices for allergies...non invasive and it works wonders...then there is food combining as well: not what you eat but in what combination and at what time of the day...try picking up an old copy of fit for life..it tells the whole story...
If it isn't hormones or meds and it keeps coming back, try keeping a food journal for a month or two where you write it all down and then try to find a pattern...
Last but not least try to take probiotics to rebuild the good bacteria in your pouch and fight the bad...it could really be yeast related in which case the probiotics really do help with the diarrhea and the odour..
In any case...good luck
Sharon
 
Posts: 327 | Location: Paris, France | Registered: July 29, 2007Edit or Delete MessageReport This Post
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